Tamoxifen and Pain: What Users Say

• DOL...
• Taken for 1 to 6 months
• January 29, 2014

For Breast Cancer "I have been on Tamoxifen for four months now & have been told I will be taking it for the standard 5 years. I have had hot flashes, no period (that stopped after my second chemo in April 2013), sex drive has disappeared (also from chemo & Tamoxifen combined) and I have had pelvic pain (tends to be more apparent when I lay on my back), joint pain (in my elbow and where legs join pelvic), and lower back pain. I am hoping that some of these side effects will soon subside. Wow, it is amazing all the different side effects that Tamoxifen causes for people. Reading a lot of these comments has made me now realize that all the pains & aches I have been having truly are side effects from the Tamoxifen. It's nice to know I'm not alone!"

• MKa...
• Taken for 1 to 6 months
• January 20, 2019

For Breast Cancer "Was on tamoxifen for five hellish weeks and had every side effect except hot flashes. My body hurt, I couldn't sleep, I was angry all of the time so my oncologist wisely agreed with my decision to stop the drug. Quality of life was so bad."

• tlc...
• September 1, 2010

For Breast Cancer "Though this medicine may give you a chance at living longer, the mood swings are massive. I feel depressed and have no energy. I am always nauseous. Everything hurts. My sex drive is basically gone, and my periods are slight if not altogether absent. I have shrunk inside a bit, so now sex is painful. I have hot flashes that keep me awake at night and make me very unhappy during the day."

• Anonymous
• September 12, 2018

For Breast Cancer "I took Tamoxifen for 3 years. I took myself off of it because of the painful side effects. They began within 3-4 months after starting the med. The worst for me was the bone pain that would be so severe that it would wake me up during the night. Also, the severe pelvic pain would be so intense at times it would literally bring me to my knees suddenly. I eventually took myself off Tamoxifen, and within a few weeks, all side effects were gone. Within a few months, I started to fracture bones and developed osteopenia. Five years later, I am borderline osteoporosis and the cancer never really left. Someone mentioned having pain in their jaw. Now they want me to take Tamoxifen or an aromatase inhibitor again. I am considering taking one of the above only 2-3 days a week. Has anyone done that? I would appreciate it if anyone has a comment on taking less of a dosage or less frequency. Thank you."

• Van...
• April 15, 2016

For Breast Cancer "I was diagnosed with DC breast cancer in November 2014. After 6 chemo treatments, a double mastectomy, and 33 radiation treatments, I have been on Tamoxifen for 7 months. The hot flashes are getting better at times, and I'm taking Gabapentin for my hot flashes. The back and hip pain is horrible. I have put on 20 lbs. I go to the gym 3 to 4 times a week and ride my horse 3 times a week, but all forced. I feel bad pretty much all the time. Always sick to my stomach. Working out makes me feel more sick, but I push through it anyway. No matter what I do, I can't drop weight. I'm in the process of losing my eyelashes for the 4th time. I used to have pretty, thick hair, and now it's thin. My memory is horrible. I hate this life."

• Hal...
• Taken for less than 1 month
• January 5, 2017

For Breast Cancer "62 year old white female. Stage 2. Tumor and some lymph nodes removed in February 2015. I have been on Tamoxifen for 6 days and now the side effects are draining me. Extreme tiredness, itching skin, headaches, arm and leg pain with numbness, dizziness, and hot flashes. I am having a war with myself about medications and alternative medicine. I was extremely ill with Arimidex, suffering from stomach pains radiating to my back. The unconcern of my oncologist set me off to find alternative methods. I found an excellent alternative medicine doctor, and we started cleaning out the estrogen from my liver, kidneys, etc., but I am having a problem eliminating body fat. My breast surgeon scared me into taking Tamoxifen. The alternative doctor says there are always other things you can do. I'm torn."

• Hal...
• Taken for less than 1 month
• January 5, 2017

For Breast Cancer "62 year old white female. Stage 2. Tumor and some lymph nodes removed in February 2015. I have been on Tamoxifen for 6 days and now the side effects are draining me. Extreme tiredness, itching skin, headaches, arm and leg pain with numbness, dizziness, and hot flashes. I am having a war with myself about medications and alternative medicine. I was extremely ill with Arimidex, suffering from stomach pains radiating to my back. The unconcern of my oncologist set me off to find alternative methods. I found an excellent alternative medicine doctor, and we started cleaning out the estrogen from my liver, kidneys, etc., but I am having a problem eliminating body fat. My breast surgeon scared me into taking Tamoxifen. The alternative doctor says there are always other things you can do. I'm torn."

• Nan...
• Taken for less than 1 month
• January 9, 2020

For Breast Cancer, Adjuvant "I just started taking Tamoxifen about a week ago. I am always nauseous, I am noticing my hair thinning since I started, my jaw hurts, and the pelvic pains are so uncomfortable. I am always crying and saying things I would never say. I will need to speak to my doctor and see if there are other alternatives. Hopefully, there is."

• Nan...
• November 18, 2020

For Breast Cancer "I was on Tamoxifen for a total of two weeks. The first week went alright, with mild and fleeting hot flashes. By the second week, I was bent over with pelvic pain and pressure. It got so bad I was in tears by the time I saw my oncologist. They took me off of the Tamoxifen and sent me to a gynecologist. My uterine wall was thicker than they like to see. They told me Tamoxifen couldn’t possibly thicken the uterus that fast, but they didn’t rule it out. I haven’t had any previous issues - not for over 22 years. So, too coincidental. After almost 3 weeks off of the Tamoxifen, my symptoms are gone, and my gynecologist thinks my uterine wall will be thinner at my next check-up in a few months."

• Anonymous
• January 5, 2012

"I started taking this medicine after an abnormal mammogram and biopsy found precancerous cells. I have really bad hot flashes several times a month, some joint and leg pain. My menstrual cycle is regular, but I experience nosebleeds the week before. My hair started to thin about 3 months after starting this medication, that has pretty much subsided, and I am going on one year now. I do get a little more irritable than usual, but all in all, things are pretty manageable now. So only 4 years to go!"

• Jmh...
• Taken for 1 to 2 years
• March 26, 2023

For Breast Cancer "I started tamoxifen one year ago. For the first four months, I had not one side effect, but then I slowly started getting side effects. I was severely depressed, angry, and agitated, had hair loss, sweats, chills, insomnia, tiredness, aches and pains in my ankles and knees, pins and needles, and cramps, and the worst is the UTI, but when you have tested, it’s negative. I just get the side effects of UTIs, so can’t have any medicine as there is no infection, hmmm. It’s easy to take. I’m on 20 mg daily for 10 years as I’ve had invasive lobular breast cancer and had some lymph nodes removed as well. The only good thing with this drug is I haven’t had a period in five months or any period cramps. I’m 52 years old and was not menopausal, but I’ve found different brands give different side effects, and trying to get the brand you prefer is much harder than people think. This is a potent drug that is doing at the minute what it’s supposed to do, so I will carry on taking it."

• Ney...
• July 27, 2021

For Breast Cancer "I was diagnosed with breast cancer last year at the age of 32 and had my mastectomy on Oct 28, 2020. I began taking the tamoxifen in Feb this year (2021) and stopped after a few days. After visiting my oncologist, I realized how important it was that I continue with the medication. I’ve taken the medication consistently for two months, and within the months, I’ve experienced hot flashes, insomnia, leg pains, and mood swings that have interfered with my life. Counseling is a great help along with my support system. On top of this, I can’t begin freezing my eggs until after being on the medication for three years. There are a lot of sacrifices I have to make and realities that I have to face at now age 33. I want to live and will do what’s necessary to make sure that I give myself that chance to."

• Hap...
• Taken for 1 to 2 years
• April 1, 2018

For Breast Cancer "I have been on this drug for one year. Have pain, weight gain, lack of sleep, tiredness, but I am alive. I think it gets easier as time passes. I try to remain positive."